Ayelet’s Enduring Spirit

Hindy Poupko Galena’s heart-rending story of inspiration and tragedy.

Hindy Poupko Galena has been hailed on lists of "top Jewish Americans,” mostly for her role as the mother of Ayelet, a beautiful baby girl who captivated the Jewish world with a boundless joy that belied an excruciating chromosomal disease that would claim her life at the age of two.

Hindy and her husband Seth, an advertising executive, attracted international attention with a series of bone marrow drives to find Ayelet a match, and with a no-holds-barred blog, “Eye on Ayelet,” that chronicled the good, the bad, and the ugly of caring for a critically ill baby. The blog drew 14,000 viewers a day, plus thousands more to a Facebook page.

Aish.com spoke with Hindy during a break in her busy day as director of Israel & International Affairs at the Jewish Community Relations Council of New York.

Aish.com: Take us back to the beginning, when Ayelet was born.

Hindy: Ayelet was two months premature, weighing just 2 lbs 7 ounces. At the time we thought it had been a problem with the placenta. But when she was a year old, Ayelet was diagnosed with dyskeratosis congenita, a rare genetic disorder that hinders growth and affects almost every system in the body. So we understood that the premature birth was related to her disease, which had already begun in utero.

Aish.com: Is this a particularly “Jewish” disease?

Hindy: No, there are only120 cases worldwide, so it’s not associated with any ethnic group. But in needing a bone marrow donor, the best match for Ayelet’s HLA (Human Leukocyte Antigen) tissue typing was most likely of Jewish-Ashkenazi background.

The problem is that the Jewish community is under-represented in the bone marrow registry. So we launched high-profile donor drives, where people could show up and swab their cheek tissue. Thanks to some well-connected friends and organizations, we got attention from celebrities like 50 Cent and Rihanna who heard about Ayelet and tweeted about her cause. That’s when this took on a life of its own.

Aish.com: Throughout this entire process, you and your husband chronicled the many ups and down in a blog. What prompted you to take such a public approach to your personal life?

Hindy: These donor drives were successful because the community got behind us and we felt that we owed them our honesty about the situation. It proved very comforting for us, to have so many caring people to share with.

We also saw this as a way to help other parents with sick children feel that it’s okay to talk about what they’re going through. We wanted to show that illness is not something that people should be embarrassed about or stigmatized.

Aish.com: What was the outcome of these bone marrow drives?

Hindy: Already 60 matches have been made for people needing transplants. We never found a perfect match for Ayelet, so we had no choice but to move forward with an imperfect match. We did the bone marrow transplant when Ayelet was 21 months old.

Aish.com: Was the transplant successful?

Hindy: Yes, Ayelet was fully engrafted. At the same time, the bone marrow transplant was never expected to be a cure. It was one among a series of things that we'd have to do. But after 100 days post-transplant she contracted a lung infection. She was in a very compromised state, with a weakened immune system, and a disease that hinders her ability to heal normally. It was a very serious situation and we lost her.

Aish.com: There are other sick kids, and yet Ayelet captured so much attention. Over 1,500 people attended her funeral. What was so special about her?

Hindy: There was something about Ayelet’s persona and spirit that people were really drawn to. She was always smiling and full of life, and people wanted to know her story. Even in times of severe pain she was in good spirits.

I also think that the way my husband wrote the blog drew people in. It didn’t hide any of the tough stuff, or paint a rosy picture. It was very human, with a lot of humor and real moments. We didn’t just talk about the lab reports, but also about our experience celebrating Shabbat in the ICU. In the age of digital media, people are craving authentic communities, and Ayelet’s story offered something that people wanted to be part of.

Aish.com: In what ways did these people get involved, other than to read the blog?

Hindy: There was so much that happened beyond the digital space. Thousands of prayers were said on Ayelet’s behalf, and people emailed us saying they’re lighting Shabbos candles for the first time, as a merit for Ayelet. It was incredible to hear from strangers who were taking real action to help. These are the things that kept us going.

Aish.com: After Ayelet’s passing, what is the enduring message these people are left with?

Hindy: Parents got their kids involved, and for kids it’s very hard to understand when you do the right thing and the outcome is different than you hoped for. That can be a very confusing experience. We don't know why bad things happen, especially horribly tragic things. But we can look at the good that came of this – she was the catalyst for breaking cultural and religious boundaries. Ayelet became a unifier for many people coming together to fight for the life of a little girl. All of these positive feelings – this spirit of unity – continue to live on.

Aish.com Tell me about your own transformation and journey through this.

Hindy: For me this was a profound lesson in what it means to be part of the Jewish community. It was fascinating and inspiring to see how different pockets of the Jewish community came out for us. A chassidish mother from Brooklyn dropped off challah literally every Friday for months. A Chabad rabbi arranged an apartment for us after ours was destroyed by fire. We didn’t belong to their synagogue, but they stepped up to the plate. And it made me think: Would I do the same for them? If a chassidish mother in Brooklyn needed my help, would I step up for her like she stepped up for me?

This made me rethink my notion of community. With so many Jews in New York, it’s easy to be particular about the kind of Jews you associate with. We tend to hang out with only those who fit our particular understanding of what it means to be Jewish. But our experience with Ayelet threw all those stereotypes away and it made us feel part of the Jewish community in the broadest sense. It was incredibly empowering.

Lately, Seth and I have been speaking to different Jewish audiences, trying to keep this message alive – the importance of community and being there for each other.

Aish.com: How did Ayelet’s illness affect your relationship with God?

Hindy: I’ve never felt any inkling to “blame” God, because that’s not the way I view the world. I’m devastated that Ayelet was born with this illness, but it never made me question, “Why would God do this to me.” Faith in God means being okay with some degree of uncertainty, and accepting that there is no final answer when these things happen.

On the contrary, I very much see the Divine nature of this whole thing: Ayelet was meant to be in this world, yet her body was not equipped to be here for long. We were chosen to be her parents, and I feel blessed that we had her.

Aish.com: Tell me about your final days with Ayelet.

Hindy: She was in the hospital in Cincinnati, on an oscillator, which is a serious breathing device. We knew that her lungs were weak, but we were used to these things and figured she’d come out of it.

Seth and I very much complemented each other in terms of strengths and weaknesses, and we took turns staying with her. On Sunday I was with Ayelet when she started having kidney trouble. I wasn’t particularly alarmed because we were so used to these types of complications. Seth was in New York and I suggested that he take the last flight out to join me. Once he got on the plane, Ayelet’s kidneys improved quickly, so it seemed unnecessary that he came. But Ayelet quickly took a turn for the worse and within 24 hours she passed away.

The fact that we were all there together, when we were usually taking turns, was a great comfort to us. For that I am eternally grateful.

Aish.com: Obviously you never just “move on” after the death of a child. What have you found most helpful in dealing with your grief?

Hindy: The best Jewish response to a tragedy is: What positive action can I take in response? A few months ago we had a big event which raised hundreds of thousands of dollars for the Gift of Life bone marrow registry. We also presented the Ayelet Galena Courage Award to kids who are fighting serious illness. Even at such a young age Ayelet inspired us and so many others with her cleverness, warmth, optimism and courage. So giving those kids a boost of hope was really keeping in Ayelet’s spirit and memory.

Aish.com: There’s a long list of undertakings to perpetuate Ayelet’s memory – toy drives, a playground in Israel, even "Ayelet Kindness" playing cards. What project has been the most meaningful to you?

Hindy: Alot of money was donated to Cincinnati Children’s Hospital in Ayelet’s memory. The doctors told us that one of the comments they hear most often is that the walls in the bone marrow transplant center are bare, like most hospital walls. So we came up with the idea of creating an art installation – to take large beautiful photographs of children a few years post-transplant, showing them living life to the fullest. We included information about the date of the child’s transplant, and what disease they had. So instead of bare walls, there are now pictures of hope, of kids who have been through very similar circumstances and are now doing great.

Aish.com: Your father is Rabbi Reuben Poupko of Montreal. How did growing up as the daughter of a prominent rabbi influence your experience with Ayelet?

Hindy: I love being the daughter of a rabbi. Growing up in a rabbi’s house, you learn at a young age how to relate to people from all walks of life and you also grow up seeing both joy and pain. I remember many Sundays visiting sick people in the hospital with my dad, so I understood at a young age that things don’t always work out the way we plan them. This prepared me somewhat for what I would later deal with.

This also gave me a more realistic expectation of what clergy can provide in times of grief. People often turn to their rabbis and demand an answer to, “Why did this happen?” I didn’t go through the period of mourning with unrealistic expectation of what can be said to comfort me. I knew that the best thing any rabbi can say is, “We don’t know why these things happen. All we can do is find the meaning in it, and carry that through.” Ayelet fought for life, and we owe it to her to live to the fullest, to ensure that her spirit continues to transform our lives.

Aish.com: Finding a bone marrow match was crucial to your process of helping Ayelet. For the future, are there ways to make that easier for others?

Hindy: Gift of Life has a few hundred thousand American Jews in their registry. That’s not enough. We need to find a way to make this a systematic effort, both in the Jewish community and the general public. It could be having pediatricians at a kids’ “18th birthday checkup” asking if they want to join the bone marrow registry. Or it may involve partnering with Birthright or Hillel on campus, or even a Bar-Bat Mitzvah program where kids get an email when they turn 18. In Israel when kids register for the army they are all swabbed and included in the registry. In the U.S. we have yet to find that “magic moment” solution.

Hindy: That was one of the most unexpectedly uplifting experiences we’ve had. I had never been to a Torah scroll dedication before, so I had no idea what to expect. The emotion of that night was so intense, and we felt as though that little Torah was embodying Ayelet in some way. It felt like a rebirth.

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About the Author

Rabbi Shraga Simmons spent his childhood trekking through snow in Buffalo, New York. He holds a degree in journalism from the University of Texas at Austin, and rabbinic ordination from the Chief Rabbi of Jerusalem. In 1997 he became the founding editor of Aish.com, and later the founder and director of the Torah study website, JewishPathways.com.

An expert on media bias, Simmons was the founding editor of HonestReporting.com, building it into a leading database of pro-Israel activists, where his work was cited by the New York Times as effecting sweeping changes in Mideast media coverage. He is the author of the definitive treatment of the topic, David & Goliath: The Explosive Inside Story of Media Bias in the Israeli-Palestinian Conflict (2012), which James Taranto of the Wall Street Journal calls "of crucial importance for the future of the Middle East."

In 2012, Simmons produced the critically-acclaimed short film, "Red Line on Iran," outlining a peaceful solution to stopping nuclear proliferation in the Middle East.

Rabbi Simmons currently serves as the Director of Aish Communications, handling all marketing, public relations and media activities for Aish HaTorah International.

Visitor Comments: 12

(12)
Rivki Miles (Katz),
March 27, 2013 8:33 PM

Hi Hindy,I was friends with Adina growing up (Rivki Katz). I'm soo sorry that you had to go through such a nisayon. I'm amazed at your strength and how your faith didn't waver from all of this. You're really an example of how a Jew is supposed to live life and view heartache.

(11)
Carolyn,
March 9, 2013 10:06 PM

Extraordinary

You have wrenched my heart and reminded me, as you reenforced what and how to live a life. I hope, you and your husband write a book so you can continue to pass on your's and Ayalet's storyfor others to have consolation and hope, as well as reminding people how to live a Jewish Life, a Life as a mensch,regardless of circumstances. May G-d bless you and your loved ones and keep you.This is one of the finest pieces of writing because of its content and the spirit behind it I have ever read.Thank you.

(10)
Malka Blumenfeld,
March 5, 2013 4:57 PM

Hi, Hindy. I am Aliza Blumenfeld-Chodoff's mother. Your former room mate at Stern. I don't know if Aliza told you and you know. She gave birth to a baby boy about 1 month ago. She spoke about your little girl and how she inspired her. Her baby boy is Yishai Ayal. I hope knowing this brings you a lot of joy and you are pleased. May you only see Simchos from now and continue to be an inspiration to Klal Israel. PS: I remember meeting you when I visited Aliza at Stern. MalkieB

(9)
Dee,
March 4, 2013 9:45 PM

INCREDIBLE FAITH

Hindy, I am so so inspired by your rock-strong emuna in Hashem.... I wish I could say I have the same faith as you when faced with challenges - may you and your husband continue to inspire so many people, and may Ayelet's memory be for a blessing.

(8)
Anonymous,
March 4, 2013 7:21 AM

Ezer Mizion Bone Marrow Bank

We are so sorry that Galenahad to go throug this. B"H it
sounds like HaShem has given them the inner strength to withstand and grow from their 'nisayon.' People should be aware of the fact that Ezer Mizion has the largest Jewish Bone Marrow Bank in the world. They have saved over 100 lives. People who might need this service, chas v'shalom, should be made aware of this as I am sure they were. This is just one of the many services that Ezer Mizion provides. They have offices in Israel and in the States. They provide free ambulance services, meals to those staying with hospitalized relatives, friends, etc. Camps and activities for 'special' children and many more chessed projects. The phone # in B'ne B'rak: 03-614-4444. In Yerushalayim: 02-500-2111.

(7)
Penny Sklove Levy,
March 4, 2013 1:18 AM

My G_d bless the Galena family.

Thank you for sharing your heart-wrenching journey that has led to a much greater awareness of the need for bone marrow donors. You have contributed to the saving of many lives by increasing the number of potential bone marrow donors with your dedication to such an important cause.

(6)
Hilary,
March 4, 2013 12:53 AM

Inspirational

Hindy, your devotion and faith in Hashem after such a devastating experience is incredibly beautiful and inspiring. May Ayelet's neshama rise to the loftiest heights in the shamayim and may Hashem continue to give you and Seth strength and nechama.

(5)
memaw,
March 4, 2013 12:01 AM

thank you

your family has definitely shared thier faith here.blessed many through your days of uncertainty.thats an inheritance that needed to be shared now!

(4)
helen Schwab (Chaiah),
March 3, 2013 11:01 PM

Thank you for being an example of openness re: medical trials...

... and for encouraging others to answer THE question, why do innocents suffer, by admitting we don't know and by uplifting the terrible challenge by GIVING to others. I lost a beloved grandchild one year ago. Yesterday was her first yahrtzeit. I was inspired by her parents' courage and by their focusing on the positive, as you are doing. May the Almighty give you strength.

(3)
Leah,
March 3, 2013 7:39 PM

Message to Hindy and Seth

Hindy, I really agree with and am inspired by you and your husband. Your comment about faith in G-d being ok with some degree of uncertainty and accepting that there is sometimes no final answer etc....is amazing and inspiring because it is emett.
May you and your husband be blessed to have many beautiful children.

(2)
Nancy,
March 3, 2013 7:20 PM

Your story may continue to help others

Thank you for sharing this very touching and personal story. You sound like a wonderful family. The Aish community is also large and may help to raise awareness of the need for Jewish bone marrow donors. When a child in our community needed a transplant a few decades ago, I came out to get swabbed and poked along with many others. Every new match will be a merit to little Ayelet whose memory will certainly be for a blessing.

(1)
Lisa Ortiz,
March 3, 2013 6:02 PM

Thanks for sharing...

This beautiful story made me cry.. I have a 19 months baby and I pray that God protect her. I pray God give you many children because you are wonderful parents...

I'm told that it's a mitzvah to become intoxicated on Purim. This puzzles me, because to my understanding, it is not considered a good thing to become intoxicated, period.

One of the characteristics of the at-risk youth is their use of drugs, including alcohol. In my experience, getting drunk doesn't reveal secrets. It makes people act stupid and irresponsible, doing things they would never do if they were sober. Also, I know a lot about the horrible health effects of abusing alcohol, because I work at a research center that focuses on addiction and substance abuse.

Also, I am an alcoholic, which means that if I drink, very bad things happen. I have not had a drink in 22 years, and I have no intention of starting now. Surely there must be instances where a person is excused from the obligation to drink. I don't see how Judaism could ever promote the idea of getting drunk. It just doesn't seem right.

The Aish Rabbi Replies:

Putting aside for a moment all the spiritual and philosophical reasons for getting drunk on Purim, this remains an issue of common sense. Of course, teenagers should be warned of the dangers of acute alcohol ingestion. Of course, nobody should drink and drive. Of course, nobody should become so drunk to the point of negligence in performing mitzvot. And of course, a recovering alcoholic should not partake of alcohol on Purim.

Indeed, the Code of Jewish Law explicitly says that if one suspects the drinking may affect him negatively, then he should NOT drink.

Getting drunk on Purim is actually one of the most difficult mitzvot to do correctly. A person should only drink if it will lead to positive spiritual results - e.g. under the loosening affect of the alcohol, greater awareness will surface of the love for God and Torah found deep in the heart. (Perhaps if we were on a higher spiritual level, we wouldn't need to get drunk!)

Yet the Talmud still speaks of an obligation on Purim of "not knowing the difference between Blessed is Mordechai and Cursed is Haman." How then should a person who doesn't drink get the point of “not knowing”? Simple - just go to sleep! (Rama - OC 695:2)

All this applies to individuals. But the question remains - does drinking on Purim adversely affect the collective social health of the Jewish community?

The aversion to alcoholism is engrained into Jewish consciousness from a number of Biblical and Talmudic sources. There are the rebuking words of prophets - Isaiah 28:1, Hosea 3:1 with Rashi, and Amos 6:6, and the Zohar says that "The wicked stray after wine" (Midrash Ne'alam Parshat Vayera).

It is well known that the rate of alcoholism among Jews has historically been very low. Numerous medical, psychological and sociological studies have confirmed this. The connection between Judaism and sobriety is so evident, that the following conversation is reported by Lawrence Kelemen in "Permission to Receive":

When Dr. Mark Keller, editor of the Quarterly Journal of Studies on Alcohol, commented that "practically all Jews do drink, and yet all the world knows that Jews hardly ever become alcoholics," his colleague, Dr. Howard Haggard, director of Yale's Laboratory of Applied Physiology, jokingly proposed converting alcoholics to the Jewish religion in order to immerse them in a culture with healthy attitudes toward drinking!

Perhaps we could suggest that it is precisely because of the use of alcohol in traditional ceremonies (Kiddush, Bris, Purim, etc.), that Jews experience such low rates of alcoholism. This ceremonial usage may actually act like an inoculation - i.e. injecting a safe amount that keeps the disease away.

Of course, as we said earlier, all this needs to be monitored with good common sense. Yet in my personal experience - having been in the company of Torah scholars who were totally drunk on Purim - they acted with extreme gentleness and joy. Amid the Jewish songs and beautiful words of Torah, every year the event is, for me, very special.

Adar 12 marks the dedication of Herod's renovations on the second Holy Temple in Jerusalem in 11 BCE. Herod was king of Judea in the first century BCE who constructed grand projects like the fortresses at Masada and Herodium, the city of Caesarea, and fortifications around the old city of Jerusalem. The most ambitious of Herod's projects was the re-building of the Temple, which was in disrepair after standing over 300 years. Herod's renovations included a huge man-made platform that remains today the largest man-made platform in the world. It took 10,000 men 10 years just to build the retaining walls around the Temple Mount; the Western Wall that we know today is part of that retaining wall. The Temple itself was a phenomenal site, covered in gold and marble. As the Talmud says, "He who has not seen Herod's building, has never in his life seen a truly grand building."

Some people gauge the value of themselves by what they own. But in reality, the entire concept of ownership of possessions is based on an illusion. When you obtain a material object, it does not become part of you. Ownership is merely your right to use specific objects whenever you wish.

How unfortunate is the person who has an ambition to cleave to something impossible to cleave to! Such a person will not obtain what he desires and will experience suffering.

Fortunate is the person whose ambition it is to acquire personal growth that is independent of external factors. Such a person will lead a happy and rewarding life.

With exercising patience you could have saved yourself 400 zuzim (Berachos 20a).

This Talmudic proverb arose from a case where someone was fined 400 zuzim because he acted in undue haste and insulted some one.

I was once pulling into a parking lot. Since I was a bit late for an important appointment, I was terribly annoyed that the lead car in the procession was creeping at a snail's pace. The driver immediately in front of me was showing his impatience by sounding his horn. In my aggravation, I wanted to join him, but I saw no real purpose in adding to the cacophony.

When the lead driver finally pulled into a parking space, I saw a wheelchair symbol on his rear license plate. He was handicapped and was obviously in need of the nearest parking space. I felt bad that I had harbored such hostile feelings about him, but was gratified that I had not sounded my horn, because then I would really have felt guilty for my lack of consideration.

This incident has helped me to delay my reactions to other frustrating situations until I have more time to evaluate all the circumstances. My motives do not stem from lofty principles, but from my desire to avoid having to feel guilt and remorse for having been foolish or inconsiderate.

Today I shall...

try to withhold impulsive reaction, bearing in mind that a hasty act performed without full knowledge of all the circumstances may cause me much distress.

With stories and insights,
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